How Support Groups Help – Parkinson’s Disease

A major illness or disorder may require the need of support from experts and others facing a similar situation. Support groups can be of great help in such cases, for both the patient and the caregiver. Meghana Srinivasan, clinical psychologist, PDMDS Mumbai, on how support groups can help those with Parkinson’s Disease.

Q: How do Parkinson’s Disease support groups work? Apart from creating a common bond between people suffering from the same problem, does it also help in coping with the challenges the disease presents? Could you share some examples or instances please.

A: In most support groups, counseling and education is the main focus with limited focus on a multidisciplinary perspective. However, a multidisciplinary approach is most important in the management of Parkinson’s disease and at a support group like PDMDS, we provide all the rehabilitation options in a community-based setup.

In our group therapy sessions, people with Parkinson’s get to connect with the right professionals, with other patients who have the same disease and with other families. We offer services like physiotherapy, speech therapy, psychological counseling and cognitive stimulation, occupational therapy, simple home modifications, nutrition advice, medications to the needy and assistive devices if patients need them. These are provided on a long-term basis and free of cost. This makes rehabilitation easily accessible, cost effective and provides a home-like environment to people with Parkinson’s (unlike in hospitals). Our group therapy sessions are interactive and lively; patients become more self-aware as they learn from other’s experiences and become more open about their experiences. The dynamic nature of the group enables people from all strata, all stages of the disease and all languages to participate and overcome barriers. As professionals, it enables us to serve more than one person at a time while remaining cost effective.

How do support groups help the caregiver? What kind of issues do caregivers usually go through?

Caregiving is a difficult process because most caregivers are not formally trained to take care of patients. The caregiver’s role is often ignored and undervalued by professionals. By being directly related to the patient, it is often implicit that they will be involved in disease management process. The diagnosis of PD can lead to feelings of shock, denial, guilt, shame, anger, helplessness and sadness in caregivers also. Moreover, they spend all their time with the patient while simultaneously juggling household responsibilities, financial problems, other family members, etc. Emotionally, they often worry about the future, what others would think of them and about their negative feelings related to caregiving. In our sessions, we teach them to accept negative feelings as normal and communicate them, encourage them to take care of their own health, make personal time for themselves and remain positive.

We also educate caregivers about the progressive nature of PD and counsel them that the patient will increasingly become dependent on them because their symptoms will be difficult to manage as PD progresses over time. On the other hand, some people with Parkinson’s become psychologically dependent on their caregivers from the outset even though they can be independent. We make caregivers aware that a patient with PD, initially at least, can still be independent. Many a time, caregivers don’t feel fulfilled despite spending hours with patients and feel they should do more. We teach them how to be aware of their limitations and to delegate responsibilities within the family. Thus, education, counseling and interaction with caregivers of other patients are beneficial to them.

Do support groups make people more aware about medication and therapy?

Yes, group sessions make patients more aware about medications and therapy. We educate them about the medications available for PD, their side effects, the interaction with their diet, surgical options and its advantages and disadvantages. We educate them about the various symptoms of PD so that they can report any new symptoms to their doctor. We also teach them to keep a record of their medication regime and help them plan their visit to the doctor so they can address their queries. People with Parkinson’s are often overwhelmed about how they will incorporate so many changes in their daily life and we help them plan their schedule.

Patients also need to understand that there are individual differences in the ways the disease progresses. What works for one patient does not work for another in terms of medication and therapy. As professionals, we emphasize this all the time because people in the group are at various stages of the disease and many misconceptions need to be clarified. Also, often patients use the internet for information about PD which overwhelms them and sometimes, even misleads them. When we educate patients face to face, we give them an opportunity to ask questions and in turn, we address their individual concerns.

A dance therapy sessionPic: Devika Mehta

Does being in a support group help people to try out various ways of treatment or rehabilitation that they may have been reluctant to earlier?

Yes. We make our group sessions interesting by adopting different forms of therapy. In our physiotherapy sessions and support groups, we have observed that often people with Parkinson’s who are reluctant to participate, start doing so when they watch others. When they see the positive effects on others, they are motivated to try it out as well. We have also introduced patients to dance therapy, music therapy, art therapy and yoga. Since these sessions are based on stimulating creativity, we encounter more resistance from patients. However, with a good facilitator and with a motivated group, even these tasks seem effortless. Treatment includes medication and surgery. Patients who have tried different types of medications or alternative forms and those who have undergone surgery narrate their experiences to others. However, we often encourage patients to clarify these aspects with their doctor and advise caution before they put them into practice.

A physiotherapy sessionPic: PDMDS, Mumbai

Silver Talkies also spoke to Mayura Prahlad of Parkinson’s Disease Society of Karnataka on how a support group can help:

The Parkinson’s Disease Society of Karnataka came together is 1996. A few of us came together to form it, which included patients, caregivers, neurologists and doctors. Initially the idea was to increase awareness about Parkinson’s disease. For instance, most people go to general neurologists, whereas through the society we refer them to specialists to take a second opinion. Why is a Society like ours important? Because it also works as a support group. A disease like Parkinson’s cannot be treated with just medication. It needs assistive therapies as well. The Society can offer patients and caregivers information about these and also conduct these therapy sessions. In fact, we conduct such sessions at least once in three to four months. We offer various therapy sessions on balance, simple movements like getting up from the bed, speech therapy, etc. We also conduct sessions with Yoga experts, physiotherapists, among others. Once a year on World Parkinson’s Day, we do a family get together and lunch and also host a Diwali Mela. These events help bring the patients and caregivers together, know each other, share thoughts, information, etc.

The membership to the group is open to all and costs Rs. 1000 for life membership. We currently have 180 members. We also offer counselling services. Many of us have first hand experience and can share that with the caregivers or patients. E.g., I lost my husband to Parkinson’s and he had it for almost 14 years. We see a lot of positive changes in the patients after they become part of this group. First of all, many are hesitant to try out new therapies or assisted therapies and it helps to speak to others and get encouraged if they have had a positive experience. It is a progressive disorder and different for everybody but patients and caregivers share concerns and doubts, notes on medication and other available alternative sources of treatment. It helps to be part of a group like this.

The nature of Parkinson’s is such that it progresses slowly over time. Hence, I understand your concerns. However it is important to note that Parkinson’s may not progress at the same rate for each. At this point, I suggest you exercise everyday, maintain good health and take your medications regularly and do not worry about the progression of the tremor.

The tremor in Parkinson’s is responsive to medications, and I suggest you consult your neurologist for the same. Additionally, some strategies like relaxation, deep breathing or meditation can also help. When the tremor bothers you, you can perform any action like touch each finger with your thumb, make a fist or squeeze a ball. This will temporarily reduce the tremor. Hope this is of help.

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